Activist Finds Inspiration In Death

Alexandra Drane regrets never asking her sister-in-law about her end of life care wishes. At 32, Rosaria “Za” Vandenberg, a devoted wife and mother, was unexpectedly diagnosed with Stage 4 brain cancer and began a journey of painful treatments and hospitalizations.

“She was diagnosed on New Year’s Eve and died seven months later,” Drane said. “One of the realizations I was only able to come to after her death, is that we did a really terrible job taking care of her, but not in the obvious ways. We were there every single night in the hospital with her throughout the entire process. But we never talked with her about what she wanted, we didn’t push back hard enough against the system. Her case was one of over-treatment.”

Drane said Za spent at least four of her last seven months in the hospital and received hospice care far too late, partly because doctors never recommended it. This month marks the 11th anniversary of her death.

“We were in a hospital that shall remain nameless but is known for delivering excellent, excellent clinical care,” Drane said. “But excellent, excellent clinical care does not go hand-in-hand with excellent human care or excellent soul care. I feel like some of the institutions across the nation that are seen to be the best are therefore by their own best intentions maybe the worst at end of life, because they feel like they’re never supposed to give up on patients.”

Drane said it was “soul wrenching” to watch her 2-year-old niece visit her once-vibrant mother lying in her hospital bed with tubes, strange noises and smells surrounding her.

“My sister-in-law was a joyful, soulful and gleeful mama,” Drane added. “Her daughter kept pulling away and pulling away from her. As a family, if you had come to us, we would have been ferocious in explaining to you how we were giving her the very best care.”

Engage With Grace

Drane gave a Ted Talk in 2010 about end of life conversations

Instead of telling doctors to do everything they can for a dying patient, Drane wants families to first ask themselves what their loved one would truly want. Then, they can work to honor his or her wishes. To help patients and families make their wishes known before serious illness strikes, Drane co-founded the nonprofit Engage with Grace.

The free website offers a “one slide” of key questions patients should ask themselves: Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?; Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advanced directive?; If there were a choice, would you prefer to die? The website also allows patients to submit their own stories of loss.

“We wanted to give people an excuse to have the conversation, the ability to say, ‘I heard about this slide, here it is,'” she explained. “Seventy percent of people want to die at home, yet only 30 percent do. We don’t usually have these conversations.”

Drane estimates the “one slide” has been viewed more than one million times. She stressed that everyone’s end of life wishes are different, and some people will choose aggressive treatments until their final day. She stresses that the most important thing is for those wishes to be honored.

Culture Change

Conversations about death and dying are becoming more common, Drane said, because of programs like “Death over Dinner” and the aging U.S. population.

“We are finally getting to a place, where maybe because enough folks are hitting that age and the demographics are sort-of creating a mandate that we will all have this experience and for most of us it will go bad. But baby boomers historically aren’t happy with things that are bad,” she said. “Baby boomers changed how we were born, how we have jobs, how we marry and how we have kids. I hope they will change how we die.”

She hopes to provide resources about personal finances, because so many seniors lose most of their assets in their last years of life.

“Dying well is also more cost-effective,” Drane said. “Twenty-five percent of seniors lose all their assets in the last five years of life because of advanced care. We have people who have not died in the way they would have chosen and they devastated their financial legacy.”

This piece was first published in Reuters Health. President Randi Belisomo is a contributor.

Clinicians in ICU. Courtesy WikiMedia Commons.

Doctors and nurses in a Canadian intensive care unit found that asking dying patients – or their families – to make three simple wishes, and then fulfilling those wishes, helped bring peace to the end-of-life process and ease grief.

Patients and families were invited to participate in the “Three Wishes Project” after a decision was made to withdraw life support, or when the patient’s probability of dying in the unit was believed to be greater than 95 percent.

At St. Joseph’s Healthcare Hamilton in Ontario clinicians asked how to honor patients by eliciting at least three wishes from them or their families. Then, they worked to implement those wishes – such as allowing a pet to visit, facilitating a Skype reunion, hosting a wedding vow renewal, providing Scottish bagpipe music at death or deferring life support withdrawal until after a holiday.

“We are trying to improve the quality of the dying experience in the cold, technological, efficiency-driven intensive care unit,” said Dr. Deborah Cook of McMaster University Health Sciences Center in Hamilton, one of the authors of a report on the Three Wishes Project.

“This is a time when compassion is called for from everybody,” she said.

To study the effects of the project, she and her colleagues enrolled 40 patients, and 159 of their 163 wishes were implemented. The cost ranged from nothing to $200 dollars per patient. Wishes were classified into five categories: humanizing the patient (for example, recreating date night in the ICU), personal tributes (providing a final meal for the family in an ICU conference room), family reconnections (dying with all family members present), rituals and observances (bedside memorial service) and “paying it forward” (organ donation).

Within six months after a patient’s death, the researchers interviewed at least one family member. In addition, within two weeks after a death, three clinicians who had cared for that patient responded to emailed questions. A qualitative analysis of transcripts, letters and field notes reflects a personalization of death by dignifying the patient, extending families a voice and fostering clinician compassion.

As reported in Annals of Internal Medicine, one mother said the program “honors the everyday hero: someone who may go unnoticed but whose life counted.”

A patient’s daughter responded that “it struck a chord because it allowed me to talk about her, and . . . . give the staff . . . a vision of who she was.”

A nurse wrote, “This is putting the absolute human side into the whole experience. I think this project is so powerful.”

Dr. Anne Woods, a co-author and palliative care physician, told Reuters Health that the project’s strength was in making the dying visible.

“It let them be seen as people, not as patients,” she said. “The family knew they were seen, and the patients who were alert knew they were seen as people, and that they mattered.”

In fact, solicitation of patient wishes was rare. Due to impaired consciousness, 33 of 40 dying patients could not express desires. Family members requested wishes for them.

Because of this, and because there wasn’t a comparison group of patients and families who didn’t make wishes, the project is “worthwhile” but “proves little,” said bioethicist Craig Klugman, chair of DePaul University’s Department of Health Sciences in Chicago.

“They conclude that this does something for the dying person, but in fact, of 40 dying people, only seven were able to speak,” Klugman told Reuters Health. “It’s impossible to claim any benefit for patients.”

But Patrick Cullinan, medical director of critical care services at Metropolitan Methodist Hospital in San Antonio, Texas, feels that any intervention that allows families to feel cared for is valuable.

“It’s giving a face to a faceless process,” Cullinan, who was not involved in the study, told Reuters Health. “The patient is being told indirectly that we care about you, we care about your loved one and we want to help you with the grieving process.”

Perhaps the project’s best result is the recognition by ICU staff that they can offer meaningful gestures at any time.

We all face difficult trials, but few of us will lose both parents, an in-law and cope with a spouse’s newly diagnosed chronic illness within just two years.

Despite an illustrious career studying bioethics and teaching health law at Case Western Reserve University in Ohio, Sharona Hoffman said nothing fully prepared her for the challenges of navigating the financial, social and medical costs of aging and dying.

Author Sharona Hoffman

“In 2013 and 2014, both my parents died, my mother-in-law died and my husband was diagnosed with Parkinson’s disease at age 55,” Hoffman said in an interview with Life Matters Media. “I was learning a whole lot about the challenges of getting sick and growing older and facing the end of life. I already knew about a lot of these issues, but there is nothing like personal experience to really enliven your knowledge and drive these lessons home.”

She incorporated her experiences and advice into her new book, Aging with a Plan: How a Little Thought Today Can Vastly Improve Your Tomorrow, hoping it will help others avoid unnecessary stress and confusion.

Released in May, her book offers a concise, yet comprehensive resource for middle-aged readers beginning to plan for their future or care for relatives. Hoffman views it as an invitation to open discussion about death and disease.

Roughly 200 pages, her work includes chapters and simple checklists focusing on finances (estate planning, long-term care), relationships (home management, when to stop driving, community living) and medicine (control at end of life, advance care planning, hospice).

Self-help books catering to baby boomers and their caregivers will likely become staples of bookstores as the population ages. America’s 65 and older population is projected to expand to 72 million by 2030, roughly 20 percent of the total population. Although many seniors are expected to live longer than their parents did, more than half will also require care for two or more chronic conditions.

“This will benefit everyone, but the target is baby boomers who should already be planning for their own aging process,” Hoffman added. “Being an academic enabled me to do a lot of research and use academic resources. It also enabled me to delve into the legal and ethical issues people may not know about.”

Most importantly, Hoffman encourages readers to complete important legal documents while they are mentally competent, especially because 40 percent of baby boomers do not have a living will. Nearly three quarters of all Americans have not made their end of life care wishes known.

“You need to tell people what your preferences are if you can’t make medical or financial decisions for yourself,” she said. “You have to have conversations. Do you prefer quality of life or length of life? My own experiences were a catalyst for the book.”

A French mother and son are working to bottle the scents of your deceased loved ones.

Katia Apalategui and her son, Florian Rabeau,say they have developed a secret process of preserving the unique scents of family members and hope their efforts will be used to comfort those in mourning. For about $600 (the price is still being worked out), buyers will be able to spray a deceased spouse’s pillow or blanket with their own personal aroma.

Apalategui, a 52-year-old insurance saleswoman, developed the idea with regional innovation agency Seinari — a French government initiative that helps entrepreneurs to launch businesses and to market products for free. Rabeau worked with the Department of Organic and Macromolecular Chemistry at the University of Le Havre to refine this process.

Life Matters Media questioned Rabeau about his project and its inspiration. His responses have been edited for length.

What inspired you to recreate thescents of deceased loved ones?

On Father’s Day in 2007, my grandfather passed away. Some people need to keep a photo, a video, an object or a vocal message of a loved one. My mother, Katia Apalategui, needed to keep the smell of my grandfather, Fermin Apalategui. At the beginning, she thought that she was crazy. Later, she decided to explain her idea to my grandmother, and she realized that she felt the same way. In fact, my grandmother kept a pillowcase with the smell of him.

As we explain on our website, my mother was looking for a mixture of different smells that wasn’t only his cologne. My grandfather was sick and diabetic; now we know that some diseases give off a special smell.

Moreover, he would spend all day in his bed, because he also had cancer. His little dog was always with him, and his dog had a very special smell, too. By the end, he was perfumed with Fahrenheit, which is very strong cologne. So in reality, my mother was looking for this whole olfactory symphony.

Courtesy Florian Rabeau

How are the scents created?

We spent a lot of time (around seven years) and money to develop the process, so we decided to keep it secret.

In contrast, I can tell you that to faithfully do our job and re-transcribe the smell of a loved one, we need a cloth really soaked in scents. In fact, that is the raw first way to give to people who are really sensitive to smells some olfactory comfort.

Between the time we receive the cloth and the time we give it back with our handmade luxury box, we need approximately two weeks.

When can people buy them, and will they be available in the U.S.

We still have a lot of things to do before we are ready, but our laboratory will be up next October. At the beginning, we planned to launch our olfactory comfort box on the French market through funeral directors. During these last months, we realized there is a real infatuation from other countries, and more specifically, from the U.S.

Consequently, we are working to put our website in English as soon as possible and propose a way for all olfactory sensitive people to order directly from our site at the end of the year.

You have received a lot of media attention about your product, does this surprise you?

Humbly, we didn’t expect the worldwide media attention. We thought that only few French regional media would be interested. We have conducted interviews for the U.S., Canada, Brazil, Europe, South Africa, Russia, Japan, Australia and others. We are very happy to see that a lot of people are sensitive to smells– that proves that we were right to persevere. Now, we are looking forward to launch Kalain and to be able to give some olfactory comfort.

What will people receive?

We are not selling just a bottle of perfume, but a complete handmade box to comfort yourself for very special occasion. Actually, we are working with a designer to offer the best value to our customers.

But I can tell you that our product will be composed of a space to put a photo of your loved one, a square silk with his or her initials, a small piece of ceramic from Limoges, France that is designed to perfume it as many times as you want, and our wonderful bottle.

Moreover, we just had a new partnership with ParadisBlanc.com, a website specializing in the creation of online memorials. So we will also offer to all our customers a way to create an online memorial.

We would like to specify that we are not perfumers; we offer olfactory comfort to people who are sensitive to olfaction. Actually, our bottle is 10 ml, so it is really a small diamond destined to offer comfort. (Estimates place the cost at £400, or about $600)

Rare bipartisan health care legislation is gaining momentum in Washington that would reimburse doctors and teams of providers to help patients suffering serious illness with advanced care planning.

The legislation, called The Care Planning Act of 2015, was introduced in the U.S. Senate by Mark Warner, a Virginia Democrat, and Johnny Isakson, a Georgia Republican. The bill would for the first time provide reimbursement under Medicare to health professionals to consult with patients about end of life care, including advanced directives.

“This (legislation) is not intended for the advanced care planning process to be static,” said the National Hospice and Palliative Care Organization’s Jonathan Keyserling in an interview with Life Matters Media. “It should be dynamic. This should help the patient and family to better understand the disease trajectory about their health care goals and convey those goals to all of the relevant medical care providers.”

Jonathan Keyserling, NHPCO

It is believed to be the first major push in Congress behind legislation to reimburse medical providers for consultations since Sarah Palin, the former 2008 Vice Presidential candidate, contributed an avalanche of demagoguery on an effort to include payment for advanced care planning early in President Obama’s first term.

Amid the health reform debate of 2009, Palin accused the Obama administration and Democratic proponents of creating “death panels.” Meanwhile, John Boehner, then the House Republican leader, said Medicare coverage of advanced care planning would lead to “government encouraged euthanasia.”

Though neither Boehner nor Palin were accurate in their allegations, Medicare reimbursement for consultations was stripped from the legislation.

This time, there is bipartisan support and momentum for what lawmakers are calling a “voluntary and structured discussion about the goals and treatment options for individuals with serious illness, resulting in a documented care plan that reflects informed choices,” a memo from Warner’s office describes.

Sens. Warner and Isakson already have several Republican and Democratic sponsors to the legislation. Supporters include Democratic Sens. Tammy Baldwin of Wisconsin and Amy Klobuchar of Minnesota, as well as Republican Sens. Shelley Moore Capito of West Virginia and Susan Collins of Maine.

Sen. Mark Warner

“In the last several years, some have deliberately chosen to misrepresent the purpose of care planning services to frighten people to score cheap political points,” Sen. Warner said in a statement. “It’s about making sure that your doctors, your hospital, and your family know what choices you have made about your care. If a patient prefers to explore every possible treatment option, that choice will be respected.”

Under current law, doctors can receive Medicare reimbursement for “medically necessary” care during their annual wellness visit. This care can include discussions about end of life care or advanced care planning and directives. However, consultations about end of life care cannot be the only reason for reimbursement to physicians, according to the Centers for Medicare and Medicaid Services.

The proposed legislation would create a new benefit under Medicare for “planning services” for those with advanced illnesses that would not only reimburse doctors, but include payment to an entire team of providers such as nurses, social workers and spiritual counselors.

“This (legislation) doesn’t create an opportunity for a physician alone to bill for advanced care planning,” Keyserling told Life Matters Media. “The Senators have taken a different tack, envisioning an interdisciplinary approach. It brings more accountability, better care coordination and better alignment of what the family desires being delivered to them.”

To be sure, the legislation calls on the U.S. Department of Health and Human Services to develop a set of quality metrics that will measure, among other things, whether the patient’s stated goals are in sync with the documented care plan. Also measured will be the treatment that is delivered and what the outcome of the treatment was on the patient.

Providers of medical care say the reimbursement and related aspects of the legislation will fill a void in patient care.

“This legislation closes a gap in the health care system, and will strengthen our ability to comprehensively and appropriately address complex care needs that are core to our mission: to care for the whole person,” said Dr. David DiLoreto, chief executive officer of Presence Health Partners, a large network of Chicago area doctors and other providers. “We want to enhance the patient experience by truly allowing their voices to be heard in a way that is meaningful for them and for their loved ones.”

Medicare, like most private health insurers, is increasingly moving from a fee-for-service model of health care that rewards volume of care delivered to a value-based approach. This shift is designed to better ensure that patients are getting the right care, in the right place and at the right time.

“If an individual prefers a different approach after informed consultations with their health team, their families and others, those choices should be documented and honored too,” Warner said. “The important thing is being able to make that decision and trust that it will be respected.”

Several Senators backing the legislation have issued a parade of statements in the last week talking about their personal stories. Those stories come with a common thread about how lost they were when it came to advanced care planning.

“Having recently lost both of my parents, I speak from personal experience when I say how important it is for families, loved ones and medical care providers to have clear direction when making decisions about treatment in their final days,” Senator Capito said. “Sadly, Medicare will not currently pay doctors to have this conversation.”

The legislation provides five million dollars in fiscal 2016, beginning Oct. 1 of this year. The funding directs the Center for Medicare and Medicaid Innovation to create an “Advanced Illness Coordination Services” pilot program to reimburse “wrap-around, home-based services” to Medicare beneficiaries and for testing other care-coordination models.

There is also a consumer outreach portion of the legislation that will involve launching a national campaign designed to encourage advanced care planning as well as funds for a web site with information about advanced care planning, palliative care and hospice. The information will also be included in the popular “Medicare & You” handbook, sent annually to millions of seniors and considered a senior citizen’s Bible to Medicare benefits.

More than 40 groups in recent weeks have touted their support for the program.

“This legislation would help respect individuals’ goals, values and preferences for care and treatment,” Joyce Rogers, senior vice president of government affairs for AARP said in a statement. “This legislation recognizes and supports the critical role that family caregivers often play in providing and coordinating care or their loved ones.”